Wednesday, November 26, 2014

Hello friends and Happy Thanksgiving from Team 44! We have so many things to be thankful for this year...here are just a few! Our amazing family and friends that bless us with unending love and encouragement; the many doctors, nurses, teachers and therapists that have spent countless hours helping Forrest on his journey; A Place to Be and the Same Sky Project for giving Forrest a chance to share his story; the opportunity to travel to Bermuda as a family; Forrest graduating from high school and starting college (and Austin starting Grad school!); and of course, the light of hope and belief in Forrest from each of you, his steadfast supporters.

As we celebrate Thanksgiving and move into the ever-busy Christmas season, we would like to invite you to a very special event. Next Friday evening, December 5th, individuals from A Place to Be (including Forrest) will be performing in a Holiday Recital. It begins at 6:30pm at the Salamander Resort and Spa in Middleburg. Please come for a night of inspiration and holiday joy!

Wishing all of you a safe and blessed Thanksgiving,
Team 44

Austin is home! These 3 furry faces showed their support for cancer awareness by participating in "No-Shave November".Learn more here: http://www.no-shave.org

Friday, November 14, 2014

Someone told us early on that "recovery is not for the faint of heart".

It's clear Forrest that, as one of your followers recently wrote to you, "You have the heart of a warrior!"

Two weeks out from your last surgery and we are already on countdown to your next .... eight weeks and four days from today. And you are hard at work to sharpen your mind, strengthen your body, improve your voice and regain your balance.

Pilates is both fun and challenging with Kay and Toliver on guard.

NOVA offered you a medical exemption to withdraw from your online history course, but you refuse to quit. So you and Tami double your efforts to catch up and prepare for your mid term exam.

At PT, your pal Del has to tell you enough after you complete three more reps than he asks for!

Your friend Derek stays close to catch you if you loose your balance playing pool, but that doesn't stop you both from enjoying a seriously close match!

Onward and upward, Champ. Your courage, sense of humor, and your unwavering friends will carry you on wherever the road leads!

Saturday, November 8, 2014

Forrest had a good day today. He woke up with a smile on his face and his voice was much louder and clearer than the previous few days. He walked down the hall with help from the hospital Physical Therapist, played catch with Toliver and Skyped with awesome friends Nick and Tori. We are still on track to break out of Hopkins midday tomorrow and will do our best to keep you all updated.
-Team 44

Thumbs up with Nick

44 trying not to smile for a pic with Tami. He said we could only post this pic if it was small. :)

A day late, but this is playing basketball with friend Ben on Friday. 44 is being supported by a physical therapist behind him in this pic...he's not quite steady on his own yet.

Friday, November 7, 2014

Among the many blessings bestowed upon our family during this journey of Forrest's recovery are the amazing doctors nurses therapists teachers aides caregivers extended family members and friends who have so generously given their time energy talent and devotion to help Forrest find his path.

Today Dr. Kumar and Forrest delighted in putting their "Noggins" together outside of the operating room!

The current plan is to give Forrest another day at Johns Hopkins to make certain he is stable on the new medications and that the new stomach access is healed well enough to be fully functional. If all goes well tomorrow, we hope to be BrightWood bound on Sunday!!!

Many thanks for all your blog comments, Facebook posts, video messages, texts, prayers and positive energy. We couldn't do this without you.

Thursday, November 6, 2014

Hi friends. Forrest had a relatively quiet day today. His head bandages came off early this morning and the doctors are very pleased with how it looks. Forrest is still weak - from a combination of residual anesthetic, pain medication and a new seizure medication. He also has not had any nutrition for three days! This is because of the surgery on his stomach and the new tube location, which is looking good so far. He received Pedialyte through his new tube today and the current plan is to start with a little bit of smoothie nutrition tomorrow.

We have only heard a few words from Forrest since surgery, but we know he is able to talk, which is a blessing! We believe the overall weakness as well as a sore throat from being intubated during surgery are the reasons he has not made much effort to speak yet. He has been relying on gestures, small smiles and writing to communicate. Here is a message from him to all his incredible supporters! http://youtu.be/12SvkOGiptA

Forrest saved his biggest smiles of the day for his friend Christina, who fought the Baltimore rain and traffic to brighten 44's day. Seeing his face brighten up when she walked into the room proves that there is no better magic than friendship!

Thank you all for the wonderful messages, thoughts and prayers! Although this week did not begin as we had hoped, we are confident in Forrest's unwavering spirit, the support of his team at Johns Hopkins and the healing love from friends and family.

Wednesday, November 5, 2014

Forrest, Rae, Toliver and I started the day early. We went over at six to relieve Tami after her all night vigil at Forrest bedside. Toliver was excited to see Forrest. 44 was determined to catch as much sleep as possible before they took him off to preOp.The morning was a flurry of doctors quick discussion about what's going to go on and sign authorization forms. Since we were doing multiple procedures there was a timetable that had to be closely followed. G.I. surgeon's, central IV lines and craniofacial reconstructive surgery was all going on with multiple doctors and nurses involved. Dr Kumar was orchestrating and had the starring role in the scalp reconstruction, The whole process had been turned in serious doubt from the seizure the day before. We were determined to understand the cause before we went forward with the procedures today. Once we were finally able to determine that it was simply a medication adjustment we could proceed on. Dr. Kumar picked the group back up realigned everyone in the process and it went smoothly on today. These procedures today were to prepare the scalp for the reconstructive bone grafts which will reform his cranium. This is going to be done in two stages in the winter and spring. The stomach tube or PEG tube which he receives a large amount of his water and medications through was giving him troubles and was approximately three years old. It needed to be surgically revised and a new connection to put the tube through his stomach. Both these procedures were achieved in good order. Forrest is resting comfortably with a little bit of IV pain medication to help him through the day. Toliver is very relieved to be bed side with Forrest and be back in the same room as it makes him concerned when he is separated for any length of time. Operating rooms are one of the few places that service dogs cannot go.So Rae and Tami are resting preparing to take back over while I am sitting bedside with the boy as he is sleeping.We have dodged another bullet. There are some days weeks months and years we feel like we must be living in "The Matrix"movie we have been dodging so many bullets. With a little luck we will be out of here on the weekend and back at Brightwood.Thanks for all your support, prayers and care.Dad and Team 44

This morning within minutes of waking, Forrest had a grand mal seizure lasting approximately 7 minutes.

Terrifying. I cradle your head and call for help. Toliver rushes to your side. The rapid response team and a herd of specialists storm into your room. Your whole body contorts, your oxygen level plummets and you lose consciousness.

I hold your hand Forrest and command you to stay with me. My own heart races matching yours. The number of doctors and nurses in the room swells and spills out into the hall. Orders fly around the room. A resident lifts your chin to open your airway applies a mask to your face and begins positive pressure ventilation. Someone slides a board under your back preparing for CPR. Another places a catheter in your arm draws blood and administers meds. This can't be happening. Look at me Forrest. Find my eyes. Squeeze my hand. I can't loose you now.

An eternity passes. Finally finally your eyes find my eyes and you squeeze my hand. Your heart steadies and then so does mine. The entire room begins to breathe again.

We transition from crisis mode to what happened? Why? After the seizure, for hours you can't use the left side of your body, lift your left arm, wiggle the toes on your left foot, no left thumbs up. You don't speak.

A stroke? The shunt? Neurologists, neurosurgeons, internists confer. Cat scans blood work exams more residents more questions. Mostly you sleep. By Late afternoon most of the worst possibilities have been ruled out.

You wake, lift your head, look over at me and smile. My heart breaks all over again. So precious so fragile is this life. In an instant the world shifts and then shifts again.

Gradually through the day you resurface. Your eyes are clouded, your balance off. Endless neuro exams ...you get the date right but think you're in Mercersburg. Or you nail the location but think it's March.

The best medicine comes in the form of face time with your friends and calls from Austin. You find your voice for them. They believe in you without question and that belief sustains us. They joke with you. You joke back. The connection is made. You are here with us, alive, still moving forward, rebuilding your life.

Tonight with all the tests in, your team of specialists decide the most likely cause of your seizure is related to complications with your medications. Adjustments are made and the decision is to move forward with surgery tomorrow.

You are strong Forrest. You are loved. You have much yet to accomplish in your life. You can do this. And we will be there to cheer you on.

As your uncle John said the weekend you were injured, "Failure is not an option." Sweet dreams, Forrest. Tomorrow belongs to you.

Monday, November 3, 2014

Forrest is settled into his room at Hopkins after a busy day of testing and studying. Based on the ultrasound and GI contrast radiology from this morning, the plan is still that both surgeries (mentioned in the previous blog post here: November 1st Blog ) will take place on Wednesday. Forrest was not allowed to eat anything ALL day today and made up for it tonight by eating two dinners! Down time between appointments and being admitted was filled with college coursework and nap time. Toliver faithfully watched over Forrest today, despite his visible concern about being back at the hospital. He was quite reluctant to leave Forrest tonight and is anxiously awaiting morning. Tomorrow for 44 will consist of college studying, getting some pre-surgery rest and charming the hospital staff. He will have a PICC line put in at some point during the day and will once again be unable to eat anything to prepare for surgery.

We'll update when we can.

As always, we are thankful for your unwavering support of Forrest.

-Team 44

Forrest was not super thrilled about studying for his college class today, but he worked hard!

Saturday, November 1, 2014

October has been a wonderful month filled to the brim with family, friends and new adventures.

I think Forrest summed it up best in his answer to a student's question after a recent Same Sky performance. The pretty high school senior stepped up to the microphone and asked Forrest, "How has your disability impacted your life?" I held my breath because I never really know what Forrest is going to say... I needn't worry. He smiled his charming crooked smile at her and replied, "I wouldn't really consider it a disability. I've had lots of fun and new opportunities since my accident....that I didn't really think were going to be possible. But thanks for asking!"

One of the most Incredible opportunities Forrest has had is to be a part of the Same Sky cast. Their contagious comaraderie and courageous performances have touched the hearts and minds of more than 6000 students during October, Disabilities Awareness Month. Who could have imagined this would be possible???

Sometimes the best adventures take you out of your comfort zone and off the beaten path. Time in the woods always seems like a good idea to me. So Forrest and Toliver joined Dolphin Quest's stream clean up outing. In spite of the rain and the uncertain hike, we kept Forrest dry and safe. It turned out to be a delightful new form of group physical therapy...picking up trash!

Gio and Shayna's spontaneous week end visit motivated us to venture out for Gold Cup. With both of them glued to his side, Forrest was able to safely navigate the terrain (without his wheel chair!) and thoroughly enjoyed a gorgeous fall day at the races. The best part of the day was to see Forrest enthusiastically embraced by friends and followers who were thrilled to see him out and about!

Back at BrightWood, under Gio's careful watch Forrest picked up a Lacrosse stick for the first time since his August surgery. Naturally, his first toss to Gio was a behind the back pass! By the end of an hour long practice, Forrest was stepping into the groove and slamming the ball into the net!

I store all of these precious moments in my mother's heart, grateful beyond words for Forrest's unsinkable spirit, the love and faith of family and friends, the blessing of bright, joyful, autumn days at home.

Tomorrow we pack up Forrest's mobile entourage and head back to Johns Hopkins for Forrest's 16th surgery. He will likely spend five days in the hospital for tests and consultations prior to a dual surgery on Wednesday, November 5th. The current plan is for a gastroenterology surgeon to surgically close his leaky troublesome stomach tube and replace it in a more functional location. Simultaneously Dr. Kumar, his cranial facial reconstructive surgeon, plans to surgically excise an old devitalized skin graft on his scalp. This will make sure there is a healthy resilient surgical site for the two bone graft surgeries to follow in 3 and 6 months.

It is hard to leave the relative safety and peace of home to head back into our own personal war zone. But we are grateful, both for the time we've had at home to recharge and for next week's opportunity at Johns Hopkins to continue Forrest's journey of recovery. Wherever it takes us, Team Forrest will go together with a glad heart and the strength of our faith and conviction.

We will do our best to keep the blog updated next week. Your comments and messages of encouragement are always a great boost to our morale and keep us focused on a future bright with endless possibilities!